Help Me To Remember This Too

Last fall I wrote a post, Help Me To Remember.  I wrote it during a very, very difficult and trying period.  Upon rereading this post I am immediately taken back to the stress of that time, although it was just short months ago, it feels like an eternity ago  We were having a rough go, we had just moved house, which was humongously stressful to our little man.

But now, some months later, we are, in a word, settled.  We are floating on the tranquil ocean of routine.  We great each day knowing what to expect, what`s to come.  Home is a peaceful, enjoyable place to be.

Our boy surrounds himself with his art.  He skips in and out from the backyard, freshly revealed since the winter snow.  He loses himself in his interests,  his little sister is quickly growing into a cherished playmate, he has discovered the computer... and even more amazingly, the cat has decided that he loves him back!   

Our boy is joyful. Our boy is joy. So often these days his sweet little face beams, his whole body jolts with excitement.  We look at him and just know we are doing right.    His differences feel more like a source of joy and pride than a source of stress.

And I need to remember this too.  This feeling that all is right with the world.  This feeling of truly enjoying our days.  Help me to remember each sweet day, each broad smile, every day that things just feel good.  Because these are the days that will carry us through the harder times.  These days are the ultimate goal for us...a happy boy and the unmistakeable feeling that we are serving him well. 

Going Up

If I had to use an analogy for parenting a child with autism, I'd compare it to a creaky staircase.

Chances are, if you've got a creaky staircase, along with the creaks, your staircase has some beautiful features, intricate woodwork, tonnes of character...in short, it's well worth a few squeaky treads.

Over time, with a little practice you learn to sidestep some of the louder squeaks in your travels, with experience, this doesn't even seem like work, you catch yourseld deftly dancing upwards, a little to the left or a little to the right with hardly a thought.  There's even been a few times you found yourself stumbling, but luckily you have that lovely railing to lend you support.

You even decide that a lot of repairs aren't all that necessary.  There's something rather fetching about some of these little creaks and groans, they've grown on you, it's become impossible to seperate them from the beauty of that stiarcase.  You no longer want to.  They are your stairs after all.

You probably have friends who bought houses about the same time as you.  Some of these homes have sleek modern staircases.  Upon visiting them you often marvel at their efficiency, and how easily you can make your way up and down.  But you can't help but feel that they're missing something, perhaps a little too mainstream for your taste.

The great thing about your staircase is that its charm has become as much a part of your travels as the journey itself.  A journey that always gets you where you need to go, even with a few obstacles along the way, a journey that has somehow taught you how to dance... and a journey that is always going up.

Lost

On Saturday, my little family released colourful baloons.

That night, we let a blue light shine over our door.

I posted relevant links of facebook, and changed my profile pic to the World Autism Awareness Day symbol.

But none of these actions helped to stop a small 3 year old boy in Quebec, with autism, from wandering off.  Or help people know how to find a child who cannot cry for help.

The ground search has just been called off for sweet little Adam.

And my heart screams.... for another little boy lost. 

Despite the passage of time, let's all continue a vigil of hope, and pray for the miracle of his safety.

World Autism Awareness Day 2011

Today marks World Autism Awareness Day.  Last year I marked the day with thanks,  today I will mark the day with a wishlist....

It's my wish that a day will come that the effect autism has on families is recognized by those who are in positions to adopt policies for change.

That someday when a child decides to throw a meltdown in public, that others will be more compassionate, maybe even helpful.

That families feel that they have valid options for intervention.

That waitlists for vital services dissapear.

That autism families will stop becomming the target of a huge marketing machine.

That the telltale signs of autism will be known by all...

That when a new family gets a diagnosis, the fear is less and the hope is more.

Thick skins for all.

Community.

That people will notice our blue lightbulbs, colorful balloons and puzzle piece ribbons today, and take time to ask what they mean.

And lastly an abundance of blessings, love, support and tolerance for my little boy, and all the other children on the autism spectrum.  That you all continue to shine, and amaze us with your beautiful, unique way in this world.

You Can't Make This Up

It's all Toy Story 3, all the time at our house these days.  Santa was kind enough to brng Aiden the DVD, but even more treasured is the Toy Story 3 game for his DSi.  Now that's a hit.  What's interesting is how he plays the game.  While he does play through the game in the intended way from time to time, what he really loves is exploring the minor details of Andy's house.... and recreating them in ours.

Need an example?  In Andy's kitchen, if you prowl around you'll see three pots in soak in the sink.  So, of course, I often find three pots covered in suds in my sink too.  The Woody character jumps on lever door handles to open doors in the game.  We don't have those kinds of door handles at our house, so Aiden has been kind enough to cut some out and tape them to our boring, standard issue door knobs.  In the garage at Andy's house some tools are hanging on a peg board.  We now have the exact same arrangement on hubby's peg board.  Are you starting to get the picture?

It's all in the details for Aiden.  It's what makes him such a fantastic little artist, easily mastering the art of three dimensional drawing.  It's what he enjoys, and although his preoccupation with detailed      re-creation can be frustrating at times, particularitly when your furniture is constanly being rearranged whenever you leave a room, we know that it is  exactly this focus and fine-tuned thoroughness that will lead to his success in the future.  If he is blessed enough to work or study in an area of great interest, his results will be boundless.  He'll never tire of small details, his brain is hard-wired for acting as a fine tooth comb.

But from day to day, while he is so young, his exhaustion of an interest can be challenging.  And this is the part I could never make up.  There's a scene in Toy Story 3 where Woody is in a bathroom, and a janitor enters with one of those big housekeeping carts to clean the bathroom.  Well, guess what.  Aiden's gymnastics centre has a similar cart, and his interest and enthusiasm for it now makes it difficult to keep him in the gym.  He's been talking about playing with the cart all weekend. 

But wait, it gets better.  He has realized that you can purchase these carts, and that is what he's asking the Easter Bunny to bring him for Easter.  When we explained to him that those carts were very expensive, and not really necessary for use in a home, the tears started.  And the pleading, and the repeated questioning as to the Easter Bunny's intentions.  The acquisition of a Rubbermaid Housekeeping Cart is now goal number one in his mind.  And once he gets something in his head....

The chances that he'll have forgotten about this before Easter? Pretty well slim to none.  So, what do you do?  What would you do?  I haven't quite figured it out yet, but I think we're oscillating between sending an early letter from the Easter Bunny explaining the unlikelihood of him bringing such a large gift, (he doesn't have a sleigh like Santa after all, just a small little basket) or....shelling out $300.

We'll see.  It's like I said, you can't make this up. 

Open to Change

After Christmas, I felt like we had run into a wall with homeschool.  Aiden was pretty tired of it, and getting harder and harder to focus.  Over Christmas we had contintued on with schoolwork, I was weary of giving him a big break, afraid it would be too hard to reel him back in.

It has become apparant to me lately that the constant quest for keeping predictability and sructure in our house can render me the inflexible one.  I worry about doing things differently, because I am always aware that virtually everything I do is setting a new precedent.  Everything. 

So, it was by accident that I solved our little slump.  Aiden had been going through one of his many, many poor sleep periods.  Rather than skipping the work I had slotted for the day, I decided to break it up into little manageable chunks.  We did math, then I let him go play.  About an hour later I called him back for language arts and journal writing, and so the day went.  The next day, he asked me if he could do school the way he did it yesterday.  He explained that he liked doing little bits at a time. 

Wow.  The fact that he was able to tell me what worked best for him is a big skill.  So, that is how we have been preparing our school days ever since, and his focus in waaaaaaaay better. I really prefer laying out all of our work and getting it done, then closing the book on school for the day.  This new way tends to make homeschool spread across the entire day, which I find a little more stressful.  But, he does not.  And that is the main thing.

I guess we are learning together what works best for us.  It is still early days I guess, and our methods are sure to change as we go along.

And change....it can be good.

Reality T.V. - and me

I'm not saying that I'm proud of this necessarily, but there are a couple of reality tv shows that make me quite happy.  And they're not the big blockbusters like American Idol or The Biggest Loser, I've never even seen an episode of The Bachelor or The Amazing Race.  I'm more of a sucker for the big family ones, the old Jon and Kate Plus 8, and 19 Kids and Counting.

I really, really like them.  Like, a lot.  Seriously.

This drives hubby crazy, he says the last thing he wants to hear once his own kids are in bed is another family's children crying and bawling.  I can see his point...
But what really draws me to these shows is that I can relate to them.  No, I may not have a baseball team number of children, just two for me, thanks.  But, these shows tend to focus on how difficult, or at least, how different it is for these families to do regular everyday things. 

And while these families don't have the same challenges I have, it is nice to see somewhere else, a relfection of having to gear up for activities of daily living.  They have to prep to take their families out to dinner.  They have to think long and hard about going on a road trip.  That's what I relate to. 

Moreso, large families, or families with strong religious beliefs, like the Duggars, are a subculture, just as autism families are.  So I can relate to that too.

So the next time one of these shows are on, and you wonder to yourself, 'who watches this stuff?'  The answer is me.

Counting Sheep and Losing Sleep

Please, please, please, please tell me that there's a sleep solution I don't know about.  If only there were some magical solution to our sleep crisis, I would jump up and down right now, even though I'm operating on just 2.5 hours sleep from last night, somehow, I would get the energy.

And yes, we know all about melatonin.    And no, it hasn't solved our problems.  Helped, yes, but solved, no.

Predictable bedtime routine?  check.  Nice calming bath prior to bed?  check.  Blanket prewarmed in the dryer before tucking in?  Hot water bottle in bed prior to bedtime?  Calming white noise of a running fan?  check, check and check.

At this tender age, I really don't know a sensible way to handle this lack of sleep.  He's too young to be let to wander the house in the wee hours of the night while we try to catch some zzzzzzzs, so his lack of sleep transfers into our loss of sleep as well.  Hence my cry for help.

Is there some secret trick I haven't tried yet?

All is Quiet

the house is quiet, the hum of fans
sleeping lightly, dreaming brightly
eyes dance beneath their lowered lids

and these walls hold the sounds of the day
that passed
the rules that were followed, the steps we danced
resound throughout the rooms

but from the outside, in dim light stands
a house like all the others on the street

                    where inside lay children asleep.

Don't Pick Up

I recieved a phone call the other day that sort of shook me up a little.  It was late in the morning, we were not long finished our homeschool, generally, going about our day.  Usually I do the whole caller ID thing before answering, but I wasn`t quite expecting the usual telemarketers until I was just about to put supper on the table, or up to my elbows with the kids in the tub...but I digress.  On the phone, a chirpy woman asked for me by name, and then informed me that she was contacting women within my age group for special female cancers insurance. 

Gulp.

Not exactly the reminder of your ageing that you want to hear.  And it struck me... I can`t get sick.  I have way too much that I am responsible for right where I am, thank you very much.  And then it struck me even harder...what if I did get sick..... gulp again.

I cannot imagine anything scarier for a  mom then the thoughts of her children being without her.  Oh wait, yes I can, add special needs to the equation.  I am not just a mom, I am an interpreter of the world, a safe person, an advocate, and above all else, deeply committed, and madly in love!

Double gulp.

I quickly got off the phone, and I admit, while not overtly rude, I was curt and obviously annoyed.  There is something about being an autism parent that makes you grow increasingly disguisted with people who prey on the fears of others.

It`s a good thing I have my New Year Resolutions still posted up around the house.  I, for one, am practising living in the present.  Because honestly, these days, that is about all I can handle.

Next time, I think I will just let it ring.